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ICC Primer - International Consensus Primer for Medical Practioners

Discussion in 'General ME/CFS News' started by Bob, Oct 4, 2012.

  1. Bob

    Bob

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    A primer (a guide for medical practitioners) for the ICC has been published...

    Myalgic Encephalomyelitis - Adult & Paediatric
    International Consensus Primer for Medical Practioners

    International Consensus Panel
    Editors: Bruce M Carruthers, Marjorie I van de Sande.

    http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf
    http://www.hetalternatief.org/ICC primer 2012.pdf

    It includes treatment and management guidelines for physicians.
    It seems like quite a comprehensive document, at first glance.


    And here's the link to the original ICC (diagnostic criteria), in case helpful:
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
     
    Last edited: Jan 25, 2014
  2. Timaca

    Timaca Senior Member

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    Thanks for posting the link!
     
    Bob likes this.
  3. Bob

    Bob

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    lnester7 likes this.
  4. alex3619

    alex3619 Senior Member

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    This is a really good document. In part though I am concerned it might be too good - too much information for a busy doctor who doesn't want to deal with anything new. However, if a doctor is receptive to new information, this is the go-to primer. I think though if the doctor is severely time constrained, I suspect the IACFSME primer is a better choice.

    For advocates though, this is a really nice document. It pays for advocates to read this. I have just started really, I am going to have to go back over it many times.

    Bye, Alex

    PS This is only half the size of the IACFSME primer, my comment is because of the complexity and terseness of the material. Its good but you have to pay close attention.
     
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  5. leela

    leela Slow But Hopeful

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    Wow. That's really good. Thank you for posting!
     
    Bob likes this.
  6. jimells

    jimells Senior Member

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    Bob, thanks for the link. Your post is an outstanding example of why I find this forum so helpful.

    So far I have managed to slog through to page 9. It's a hard go, but worth the effort.

    I agree with Alex that most doctors won't bother to read this, but it should be required as part of their continuing education. If patients with cognitive impairments can make the effort to read this, and maybe even understand some of it, doctors don't really have much of an excuse.
     
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  7. Nielk

    Nielk

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    Thank you Bob for posting this.

    Will this be distributed in any way? Will it just be the patients who print this and bring it in to their physicians?
     
  8. natasa778

    natasa778 Senior Member

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    Does anyone have a link to IACFSME primer? please!
     
  9. Hope123

    Hope123 Senior Member

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    natasa778 likes this.
  10. Bob

    Bob

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    Note to everyone:
    Be careful not to get the 'IACFS/ME' primer (mentioned in the previous two posts, and in this post) confused with the new 'ICC' primer.

    There was also some completely separate news about the 'IACFS/ME' primer today...

    I'm not exactly sure about the significance of this, but The CFIDS Association of America has said the following:
    CAA announcement:
    http://www.facebook.com/photo.php?pid=136441201&l=f23d1671e8&id=47921632107

    I suggest that if we are going to discuss the 'IACFS/ME' primer further, then we start a separate thread, to avoid confusing it with the new 'ICC' primer, and stick to discussing the ICC in this thread.
     
  11. alex3619

    alex3619 Senior Member

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    The interesting thing is that based on CFSAC commentary today, the IACFSME primer may change within months. In particular the section on treating very severe patients will be expanded.
     
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  12. Bob

    Bob

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    I've got no idea about this, myself, Nielk. I don't even know if it's been officially published yet.
     
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  13. Valentijn

    Valentijn Activity Level: 3

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    Isn't the CCC intended to be for clinical use, and the ICC for research? If that's the case, then the ICC primer does seem good for researchers.
     
  14. Sea

    Sea Senior Member

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    I think the ICC is intended to replace the CCC with the intention to leave behind the CFS label for those who meet this new criteria. Sorry that's not worded very well, can't think how to express it any better though.

    And it is intended for doctors I believe
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Thanks, I've found the whole thing confusing and I think watching the CFSAC meeting just confused me even more :p
     
  16. Guido den Broeder

    Guido den Broeder *****

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    This primer is wrong. It incorrectly claims that everyone satisfying the ICC must therefore have ME. They even explicitly include nonviral causes of the complaints, which is at odds with the WHO classification.
     
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  17. SOC

    SOC Senior Member

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    I have only skimmed the ICC so far, but it appears to be vastly superior to the IACFSME Primer which seemed to me to have much too great a focus on the mildly ill.
     
  18. Snow Leopard

    Snow Leopard Senior Member

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    The ICC is a different definition than the WHO classification . That doesn't make the primer 'wrong'.
     
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  19. rlc

    rlc Senior Member

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    This document has a few good points notably saying that ME is not CFS, however yet again the tests to rule out other diseases are weak, it does not mention that the reference ranges for B12, Vitamin D and TSH still used by almost all labs have been shown to be wrong, They don’t require Homosysteine to be tested; it doesn’t say to do T4 which will lead to cases of central hypothyroidism being missed. There is no mention that I can see of testing for celiac. It doesn’t say to tests for Transferrin saturation which is a far better tests for hemochromatosis then relying on Ferritin, No glucose tolerance test to check for insulin resistance, LH and FSH are not mention nor are tests for Porphyria, Wilson’s etc, etc, etc it’s very likely that many people will have their correct diagnoses missed relying on the tests in this document.

    It is also far too long to be used by many doctors, mainly because they have decided to use what looks like every study that has ever found any anomalies in CFS patients as proof that these are found in ME, almost all of this research has not been replicated and many other studies have not been able to find these anomalies. Plus many of the studies this research was done on will have been on mixed cohorts. E.g. although some studies have found changes on SPECT scans others haven’t, this hasn’t been sorted out scientifically yet. They should not be writing about this in a way that implies it is a scientific fact!

    So when they are saying that all these anomalies have been found in ME it won’t help their cause because it hasn’t been replicated yet and many scientists and doctors will immediately lose faith in this document because of this.

    On the whole it’s not much different than the CCC, a large collection of common symptoms with multiple choices as to what symptoms the patients can have, (which means you can select patients with extremely different symptoms using this document and yet they will all qualify for a ME diagnosis.) With a poor list of testing to rule out the other diseases that can cause these symptoms, put into a document that is so long the average doctor won’t read it, most doctors won’t use the check lists in this document because they are too long and will take longer than the average doctor will be prepared to spend on them. And on top of this they are implying that there are many measurable anomalies that are proven scientific facts, when these results have not been independently replicated so therefore they are not scientific facts, they are avenues of future research that need to be explored further, until this has been done they shouldn’t be included in a document like this.

    So can’t say I’m particularly impressed, pretty much another CCC that at least’s stops combining ME and CFS and calling it ME/CFS sure it’s better than the likes of Fukuda and NICE, but it’s testing for other diseases is far too weak to insure that people with other diseases are not wrongly given ME diagnoses and included in further research.

    All the best
     
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  20. Guido den Broeder

    Guido den Broeder *****

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    Yes, it does. All countries involved signed the WHO treaty.

    Note the incidence indication in the primer of 0.4%-1% of the population. ME is less than 0.1%, so this makes it just another wastebin.

    The ICC do a fair job in describing the medical complaints involved in ME. But that's all they do. The same complaints can have other causes than ME. This primer takes us one step further away by indeed including other causes.
     
    Firestormm likes this.

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